Patient doesn't know he's terminal

[AmericanChai]

In clinicals today there was a pt. who had been in hospital for about a week. He was not aware he was terminal with cancer, but the family was aware. They had not told him yet and didn't want the staff to tell him about his dx. The pt was cognitively/emotionally intact. How can a pt. not be informed of his serious health situation, and what right does the family have to withhold that from him?! As a nurse, how can you be asked to lie to a patient if they ask how they are doing, believing they just have a minor health problem that they will recover from when they are actually terminal?

[leslie :-D]

I simply caution newer nurses that they cannot assume that what the family is doing is actually their "right" or is in the best interests of the patient.

good point, but you have to admit, this is not confined to newer nurses.

sadly, there are many experienced nurses who will advocate for the family first.

i see this in hospice waaaaaay too much.

and it doesn't help that the pt often 'bows out' of any relevant discussions re their care...

that they choose to remain passive and let the family make the decisions,

usually because it's much too exhausting in trying to fight for themselves.

and that's where our voices come in.

or so they say...

leslie

[Scrubby]

Moments like these can be hard especially on your emotions, mainly your empathy for the patient. It is hard to look at someone knowing full well that they are not going to survive their condition and knowing that they have no idea that they will be passing over soon due to their illness. It comes down to following the families wishes, if they request your confidentiality in the matter then it is the right thing to do in doing so. If the patient begins to ask questions to which you feel you are not able to lie or change the subject or avoid the truth of then it is best that you tell the patient that you will ask the doctor to speak with them as the doctor will be able to give more informative answer than you are able to due to you not being aware of the full information at that time (even if you do know everything) this way you don't have to lie to the patient and it will be up to the doctor whether or not the patient is informed. Many conditions that are terminal can be excelled by factors such as the patient being stressed, this is another reason that the family may wish for the patient to not know, they probably want him to go peacefully in his sleep rather than lying awake regretting things in his life that he didn't get to do knowing that he will be passing away soon.

So your saying that the families wishes come first before the patient then? Hand on I thought nurses were supposed to put the patient first, family second?

I think your making the assumption that the family will always have the best intentions for the patient. I don't work in hospice but I have seen first hand incredibly selfish some family members can be. For example walking into a room to find a dying woman's daughter who was a health care worker (not a nurse) forcing her semi unconscious mother to sit up in a chair which was not treating my patient with dignity.

If it came down to it and a patient asked me if they were terminal I would NEVER take the cowards way out like your advocating and pass the buck onto the doctor. Patients have the right to information.

In the OP's situation if the patient doesn't want to know then the truth should not be forced on them. But if they do want to know then despite protests from the family they should be told.

[Scrubby]

Just want to add that my spelling and grammar are particularly atrocious today. I have a new laptop and am trying to get the hang of having to use smaller keys

[bugsy22]

My Mum is currently in a hospice and is terminal, she gave me specific instructions a long time ago that under no circumstances did she ever want to know she was dying, her words were "I'd rather die in blissfull ignorance". She also told me that she would hate to know, because instead of spending her last days/hours or whatever she gets on earth, enjoying the family and friends that come to see her, she would be depressed and miserable thinking about her impending doom. When you look at it from that point of view, telling someone seems cruel. You do have to consider that some people do not have any religous beliefs, and therefore believe that this life is all you get, so the thought of dying fills them with great fear and dread and of course sadness at the thought that you will never see their family grow. Even though I know the way things work in hospitals, I have found myself arguing with palliative nurses about their approach when around my Mother. I hear some nurses saying, if they ask then I will tell them, this is fare enough, but when a nurse uses language which would easily tip a dying patient off, especially when in their notes it is expressively requested that they not be told, this I consider stepping over the boundaries. The specific language a particular nurse used in my presence was "you don't need to be in any pain any more" when "you don't need to be in any pain" would have surficed. You can understand my dilema speaking as a relative. All I suggest is that, when a family says that they don't want a relative to know, they are often doing it because they really do know their relative better than you. I know for a fact that I would not want to know either, even if I had a vague idea, I'd rather be like my Mum and go in blissfull ignorance. Oh and I might add that my Mother is not in any pain, she is not suffering, she appears happy, and I know she would tell me if it were otherwise. I am letting her lead us in her death, not the other way around. I have to say, what right do I have to disrespect her wishes.

[nursenow]

I have a patient just admitted to hospice and her family requested she not be told. Until this happened I always thought I would be against it but now it doesnt bother me. for one, I honor the families rights and it sounds bad but the patient is happily ignorant. Honestly, I am sure how long she would remember it if they did tell her. Some things she remembers and others she doesn't but she is happy and in no discomfort.

[nursenow]

The problem is that sometimes the family does not have the RIGHT to do what they are doing! The nurse is the professionally designated patient advocate...it is part of our job to make sure that the care provided is in the best interests of the patient, yes?

Do you know if the patient assigned that right over to the family? Your job is not to do what you personaly think should be done. Also the family is your patient just as sure as the sick person is your patient and you have a responsibility to them also, "Yes?"

You can not make a call against or for their decision without all the information which at this point in this thread none of us have. Just because YOU think Grand Dad should live doesn't mean it is in the best interest of anyone involved including the patient.

[leslie :-D]

My Mum is currently in a hospice and is terminal, she gave me specific instructions a long time ago that under no circumstances did she ever want to know she was dying, her words were "I'd rather die in blissfull ignorance". She also told me that she would hate to know, because instead of spending her last days/hours or whatever she gets on earth, enjoying the family and friends that come to see her, she would be depressed and miserable thinking about her impending doom. When you look at it from that point of view, telling someone seems cruel.

you are 100% correct that it would be cruel if a hospice nurse (or anyone else) dishonored her wishes.

there is absolutely nothing wrong in reminding any/all hospice nurses, of how she chooses to live out her remaining time.

hugs and heartfelt prayers to you both.

I have a patient just admitted to hospice and her family requested she not be told. Until this happened I always thought I would be against it but now it doesnt bother me. for one, I honor the families rights and it sounds bad but the patient is happily ignorant. Honestly, I am sure how long she would remember it if they did tell her. Some things she remembers and others she doesn't but she is happy and in no discomfort.

in this instance (where the pt's cognition is impaired), i have to agree with you...

especially where the pt seems "happily ignorant".

my only objection is when the pt clearly wants to know, and the family objects.

then, my loyalties and concerns, are mainly for the pt.

leslie

[dudette10, MSN, RN]

I have a question to those who unequivocally would tell the patient when the family doesn't want you to.

What do you expect to accomplish for the dying patient by telling the truth against the wishes of the family? In other words, what benefit do you see for the patient? What nursing services would you be rendered completely unable to provide if the dying patient didn't know he dying?

[rn/writer, RN]

In any situation where there are questions, it's a good idea to involve social work and/or the ethics committee. They can speak with the family members and assess the reasoning behind the decision to keep a terminal diagnosis from the patient. Are they self-serving or perhaps mired in denial? Or do they know this person would immediately take a nose dive and hasten the process? One size does not fit all. It's good to have other capable people helping to evaluate what is motivating the request. It may be that the family members are the ones who need help and that can be provided.

There was a doc who delivered each terminal prognosis with the tempering wisdom that, while it was unlikely that the patient would heal from the disease, the timetable varied greatly, and miracles do happen. He left the door open to remission and "granted permission" for the patient to balance dire news with a sliver of optimism. This seems like a good approach as no one, not even the doc, knows exactly what will happen.

Those patients who want to know the gory details can ask. Those who would rather focus on making the most of the time they have left can do that as well.

[leslie :-D]

I have a question to those who unequivocally would tell the patient when the family doesn't want you to.

What do you expect to accomplish for the dying patient by telling the truth against the wishes of the family? In other words, what benefit do you see for the patient? What nursing services would you be rendered completely unable to provide if the dying patient didn't know he dying?

choice!

choice over how pt chooses to live the remainder of their life.

choice as to what pt may choose to tell or ask a loved one;

choice as to finish uncompleted 'projects', and finally attain closure.

choice as to how they choose to die.

with pt not knowing the fate of THEIR life, they are denied precious choices.

who is anyone, to deny them that?

leslie

[elizabeth321]

I didn't take the time to read everyone elses responses....all I know is that it is not my place to give a patient their diagnosis and prognosis...I have found in my 28 years of health care experience all competent adults know they are gravely ill if they are...in any event I support them in what ever way they request...if they want to talk I listen...if they have questions I answer what I can....if I truly felt that something unethical was occuring I would advocate for that patient and speak to both the charge nurse and attending physician to get clarity on the situation....sometimes it just means the family doesn't want alot of conversation about death etc...we are all wired differently and the family is the one that has been along the journey of life with the patient and has excellent input into care needs...for the most part.

[CT Pixie, BSN, RN]

Didn't get a chance to read all the posts but one question comes to mind...

If the patient is A&Ox3, how is it that his diagnosis was given to his family and not him? If I were admitted to the hospital I'd expect my diagnosis be given to me..not my husband, mother, daughters etc. Unless I signed some sort of paper stating that I did not want to be informed of my condition and that my husband/daughter/whoever was my medical proxy.

Did this patient specifically state he didn't want to know and to tell only his family? other than that I cannot even begin to guess why an alert, oriented, "with it" person did not get his dx directly from his doctors.